Chelsea's Vocation

Suicidality is a heavy topic. It deserves a spotlight. I didn’t intend for this episode to be as long as it is (34 minutes of content), but my guest’s voice and perspective are too important to chop it up into smaller bites. That being said, as a listener, you might want to take breaks and really think this through. Give yourself time and support as you consider next steps.

Scott Allen is a mental-health counselor on the autism spectrum working with autistic adults through Madison’s "I Am Autism" clinic. He’s a board member of the Autism Society of Wisconsin, facilitator of the Madison-area chapter's autistic-adult support and social groups, founder of the AutOberFest celebration of autistic joy, and cofacilitator of the AS WE ARE autistic student-empowerment group at UW-Madison's McBurney Disability Resource Center. He’s also cofounder, team leader, and facilitator of the INTEGRAL Autistic Adults & Allies Conference, Wisconsin's first and only conference aimed at autistic adult issues, with a mission to connect autistic and non-autistic allies for social change.

These previous episodes may provide additional context on this topic:

• Episode 2: Introducing Justus
• Episode 7: Acceptance
• Episode 8: Neuroaffirming Practices
• Episode 13: Puberty
• Episode 20: Masking 
• Episode 33: Bullying 

Here are topics, terms, and resources, in order of their appearance in the podcast, might evoke some curiosity:

• allistic: someone who is not autistic
• Kirby, Anne V et al. “A 20-year study of suicide death in a statewide autism population.” Autism research : official journal of the International Society for Autism Research vol. 12,4 (2019): 658-666. doi:10.1002/aur.2076
• autistic burnout (Embrace Autism)
• The DSM-5 (The American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, 5th ed., 2013) lists the diagnostic criteria for Autism Spectrum Disorder.
• “Carl the Collector” https://www.pbs.org/parents/shows/carl PBS Learning Media https://thinktv.pbslearningmedia.org/collection/carl-the-collector/
• ambivert (Cleveland Clinic)
• warning signs (988 Suicide & Crisis Lifeline)
• Autistic Self Advocacy Network (ASAN https://autisticadvocacy.org/)

Resources: Supports

• LOCAL
  • Waukesha County Crisis Intervention: daytime hours, 262-548-7666 / nights, weekends, holidays, 262-547-3388
  • NAMI Family Support Group near you
• NATIONAL
  • 988 Suicide & Crisis Lifeline (neurodivergent specific)
  • National Alliance on Mental Illness
  • 211 for referral to community-based services

Podcast includes an introduction for episodes 6 and following at the beginning. Transition music, "Taking a Vocation", by Noey Budde.

Closing narration for episodes 6 and following.

Recently, the mother of a young woman who is working as an ABA therapist in a center reached out to Chelsea and was rather distraught. Her daughter was frequently being hit, bitten, kicked, and scratched by dysregulated children. While that’s not good either for her daughter nor for those children, there needed to be so much more context. Mom believed the center was making excuses for the childrens’ behavior. Chelsea wondered what that behavior was communicating and what might have precipitated it.

And that wondering comes from decades of hearing some form of “autism is an excuse” from various folks in the community. Chelsea remembers when her son was first diagnosed with autism at age 4, it was, to her, an explanation of so many things.

She invited Jonathan Domsky, who identifies as autistic and aphantasic, to lend his perspective to this topic.

Jonathan coaches successful entrepreneurs whose minds don’t run on default settings. He helps founders redesign the architecture of their business and leadership so their intensity, precision, and pattern-seeking strengths become leverage instead of friction. His work is about alignment—building businesses and lives that actually fit the way leaders think.

These previous episodes might provide more context for this topic:

• Episode 1: Intro  
• Episode 2: Justus   
• Episode 7: Acceptance  
• Episode 18: Service Dogs  
• Episode 20: Masking   

Podcast includes an introduction for episodes 6 and following at the beginning. Transition music, "Taking a Vocation", by Noey Budde.

Closing narration for episodes 6 and following.

Chelsea is pausing the podcast from June through August. See you in September with all new episodes!

The podcast’s second bonus content compilation features new content from 

• Episode 17: Language Development & Autism with Trisha Sacharski https://youtu.be/TEGMNwFO8qc 
• Episode 27: Ableism & Autism with Sxdni Small  https://youtu.be/eod4hBuMbi4
• Episode 30: Bodily Autonomy & Autism with MJ Lamb  https://youtu.be/H5hr5YD_XCI

Trisha is a dedicated Speech-Language Pathologist (SLP) with over 24 years of experience. Specializing in autism and augmentative and alternative communication (AAC), she is deeply committed to helping individuals find and use meaningful ways to communicate. Trisha combines her extensive clinical training with a passion for empowering others, making it her mission to ensure that every voice is heard. Outside of her professional life, she enjoys reading, gardening, baseball, and supporting her three children in all of their interests and endeavors.

Trisha’s discussion with Chelsea about AAC highlights that effective communication has everything to do with establishing relationships.

Sxdni brings their lived experience as a neurodivergent, AFAB (assigned female at birth) person to this discussion on using language of inclusivity and empowerment in the presence of disability. Sxdni was raised in a Milwaukee, Wis., household graced by kitchen table lilac blooms. Reading and community organizing were household staples in a home filled with love for words and learning. A member of the Wisconsin Writer’s Association, their work has been published in various venues including Creative Wisconsin Magazine, as well as through the Thinking Person’s Guide to Autism and Kind Over Matter.

MJ is a neurodivergent and chronically mentally and physically ill individual who is also a survivor of sexual violence. When the pandemic took over the world in 2020, MJ was suicidal and received inpatient mental health care. It was through that program that they found their love for creating poetry and abstract art. After a divorce and two address changes, MJ got diagnosed with autism at age 30. Today, they live in Milwaukee with their loving partner and two cats and have begun sharing their story of survival with the world.

MJ and Chelsea share real life examples highlighting the importance of making adaptations to respect a child’s tactile experience.

The following terms and resources, in order of their mention in the podcast, might evoke some curiosity:

• “The Telepathy Tapes” https://thetelepathytapes.com/podcast 
• Ky Dickens https://thetelepathytapes.com/about/ky-dickens 
• IEP https://www.edweek.org/teaching-learning/what-is-an-iep-individualized-education-programs-explained/2023/07
• Tactile sensitivity with clothing https://www.uhd.nhs.uk/uploads/about/docs/our_publications/patient_information_leaflets/Childrens_therapy/Practical_Tips_for_Clothing_Tactile_Sensitivity_and_Getting_Dressed.pdf 
• Episode 2: Introducing Justus https://youtu.be/ZslCrjKZ9rQ

Podcast includes an introduction for episodes 6 and following at the beginning. Transition music, "Taking a Vocation", by Noey Budde.

Closing narration for episodes 6 and following.

Studies indicate that 75% of autistic youth report bullying, often on a chronic basis. And with the increased emotional impact on autistic youth, bullying significantly increases suicidality (Autism Research Institute).

In this episode, Chelsea differentiates between bullying and disability harassment, because the legal framework that protects our children from the latter is crucial. She also explores the four types of bullying faced by autistic students, and provides actionable strategies for parents and educators to combat this pervasive issue.

These previous episodes might provide more information and/or context for this topic (listed in the order of relevant mention within this episode):

• Episode 2: Introducing Justus
• Episode 3: Noey’s Journey 
• Episode 31: Autism and "Comorbidities"

More topics, terms, and resources, in order of their appearance in the podcast:

• CDC's National Center for Health Statistics "Bullying Victimization Among Teenagers". 2024.
• “Bullying of youth with autism spectrum disorder, intellectual disability, or typical development: Victim and parent perspectives”. Research in Autism Spectrum Disorders. 2014.
• IDEA  
• OCR’s “Dear Colleague” letter dated July 25, 2000: Responsibilities under Sec. 504 of the Rehab Act of 1973 and Title II of the ADA
• OCR’s “Dear Colleague” letter dated October 26, 2010: Harassment and Bullying
• Individualized Education Plan (or Program) 
• In Loco Parentis
• school resource officer (SRO)
• U.S. Department of Education on Laws Impacting Special Education
• WI Statute 118.46 Policy on Bullying / 118.02 (9t) Bullying Awareness Day
• WI’s Department of Public Instruction on Bullying Prevention, Filing a Complaint under Wisconsin's Pupil Nondiscrimination Law 
• Wisconsin Special Education Mediation System  
• OCR’s Discrimination Complaint Form
• WI's Supporting Neurodiverse Students
• PACER’s National Bullying Prevention Center
• Autism Speaks
• Organization for Autism Research

Podcast includes an introduction for episodes 6 and following at the beginning. Transition music, "Taking a Vocation", by Noey Budde.

Closing narration for episodes 6 and following.

Many of us take for granted our body’s ability to receive and understand in real time the signals our physical body is sending. However, for neurodivergent individuals, particularly those on the autism spectrum, this process can be much more complex. In this episode, we explore the concept of interoception, what Kelly Mahler has referred to as the eighth sense, and its profound impact on the lives of neurodivergent individuals.

While James Williams, an autistic self-advocate, didn’t struggle receiving these internal messages, the struggle to address his physical needs as a student was real. 

James has spoken publicly about autism and related disabilities since age 11. He is the author of eight autism-related books, and serves on the Steering Committee for the Wisconsin Community of Practice on Autism Spectrum Disorders and Developmental Disabilities (ASD/DD). He is on staff for multiple anime conventions throughout the United States, where he also hosts panels on autism awareness designed for anime conventions. Finally, he is an active member of Glenbrook North High School’s Booster Club, his alma mater. He lives in Northbrook, Ill., and travels frequently to promote autism awareness.

Want more? These previous episodes may provide additional context on this topic:

• Episode 1: Introducing Chelsea's Vocation, the podcast, and Chelsea's family
• Episode 29: Applying the Medical Home Model

Here are topics, terms, and resources, in order of their appearance in the podcast, might evoke some curiosity:

• Kelly Mahler OTD, OTR/L https://www.kelly-mahler.com/ 
• OT = occupational therapist https://youtu.be/jhhdEQ4Z_d8 
• interoception: awareness of your body’s internal senses or signals https://my.clevelandclinic.org/health/articles/interoception
• Farb, Norman et al. “Interoception, contemplative practice, and health.” Frontiers in psychology vol. 6 763. 9 Jun. 2015, doi:10.3389/fpsyg.2015.00763 https://pmc.ncbi.nlm.nih.gov/articles/PMC4460802/ 
• dysregulation: In autistic individuals, stemming from neurological differences and sensory overload, appearing as a fight, flight, freeze, or fawn response to overwhelming environmental input.
• The DSM-5 (The American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, 5th ed., 2013) lists the diagnostic criteria for Autism Spectrum Disorder.
• McDonough, Molly. “Making Sense of Interoception: How we perceive what’s happening inside our bodies and what that means for our health.“ Harvard Medicine. Spring 2024. https://magazine.hms.harvard.edu/articles/making-sense-interoception
• Medical Academy of Pediatric Special Needs (MAPS) program-trained doctors treat children with autism, neuro-developmental disorders, and complex chronic conditions using an individualized, functional medicine approach. They focus on treating underlying biomedical issues such as gastrointestinal (GI), immune, metabolic, and mitochondrial dysfunction, aiming to improve overall quality of life. 

Podcast includes an introduction for episodes 6 and following at the beginning. Transition music, "Taking a Vocation", by Noey Budde.

Closing narration for episodes 6 and following.

Given the high rate of “something else” co-existing alongside autism, Dr. Breya Whitefield joins Chelsea as we dive into the nuances of neurodiversity, the implications of co-occurring conditions, and what families need to know to support their loved ones effectively. If you’ve heard the term "comorbidity" associated with someone with a primary diagnosis of autism, know you’re in good company.

Dr. Breya Whitefield is an Assistant Professor at the Medical College of Wisconsin who specializes in working with children, adolescents, and young adults with neurodevelopmental differences. She provides consultation and intervention for challenging behaviors that may not respond to traditional parenting strategies or outpatient mental health services. Her work focuses on helping families manage issues such as tantrums, aggression, noncompliance, sleep problems, toileting difficulties, and disruptive behaviors.

These previous episodes might provide more context for this topic:

• Episode 1: Intro https://www.buzzsprout.com/2437426/episodes/16400459
• Episode 2: Justus https://www.buzzsprout.com/2437426/episodes/16481603 
• Episode 3: Noey https://www.buzzsprout.com/2437426/episodes/16561565
• Episode 10: Mental Health & Autism https://www.buzzsprout.com/2437426/episodes/17193835 
• Episode 13: Puberty & Autism https://www.buzzsprout.com/2437426/episodes/17457609

Here are topics, terms, and resources, in order of their appearance in the podcast, might evoke some curiosity:

• In a study using a newly-developed diagnostic screener with autistic individuals, 91% of children/adolescents aged 8-17 and 31% of young adults aged 18-25 met criteria for one or more co-occurring diagnoses, including ADHD, depression, and anxiety. (Mosner et al, Journal of Autism and Developmental Disorders, 2020) https://pmc.ncbi.nlm.nih.gov/articles/PMC6669096/# 
• neurospicy
• “Autism and Suicide” from the American Foundation for Suicide Prevention  https://afsp.org/autism-and-suicide/ 
• 988 for the Autism Community https://www.datocms-assets.com/12810/1721837899-988-information-for-the-autism-community_final-1.pdf 

Podcast includes an introduction for episodes 6 and following at the beginning. Transition music, "Taking a Vocation", by Noey Budde.

Closing narration for episodes 6 and following.

Trigger warning: This episode includes the topic of sexual abuse.

For those caring for and educating neurodivergent children, the concept of bodily autonomy often takes a backseat. This is particularly concerning for autistic children, who, according to alarming statistics, are at much higher risk for sexual victimization than their neurotypical peers.

In this episode, Chelsea and her guest, MJ Lamb, explore the critical importance of body autonomy, examining how common practices can inadvertently elevate autistic children's risk of abuse. Learn what caregivers can do instead to foster in children a healthy sense of self and boundaries as protective mechanisms. This is critically important for parents, extended family members, educators, and therapists who support children with autism. It’s important for first responders and healthcare providers, as well.

MJ Lamb is a neurodivergent and chronically mentally and physically ill individual who is also a survivor of sexual violence. When the pandemic took over the world in 2020, MJ was suicidal and received inpatient mental health care. It was through that program that they found their love for creating poetry and abstract art. After a divorce and two address changes, MJ got diagnosed with autism at age 30. Today, they live in Milwaukee with their loving partner and two cats and have begun sharing their story of survival with the world.

The following terms and resources, in order of their mention in the podcast, might evoke some curiosity:

• Ryan, J., et al. (2024). “Being able to be myself: Understanding autonomy and autonomy-support from the perspectives of autistic adults with intellectual disabilities”. Autism : the international journal of research and practice, 28(12), 3092–3104.
• Weiss, Jonathan A, and Michelle A Fardella. (2018). “Victimization and Perpetration Experiences of Adults With Autism.” Frontiers in psychiatry vol. 9 203. 25 May.
• Presume competence (Stimpunks)
• double empathy problem: a bi-directional failure of one neurotype (allistic) to have empathy for another's (autistic) experience
• sensory input: See this article from the National Autistic Society.
• stim toys, fidgets (not an endorsement or paid advertisement)

These previous episodes might provide more information and/or context for this topic:

• Episode 8: Neuroaffirming Practices
• Episode 13: Puberty & Autism
• Episode 25: Trauma & Autism
• Episode 27: Ableism & Autism

Podcast includes an introduction for episodes 6 and following at the beginning. Transition music, "Taking a Vocation", by Noey Budde.

Closing narration for episodes 6 and following.

Building a comprehensive care team for your child with autism is both a journey and a necessity. By understanding the American Academy of Pediatrics’ medical home approach and actively engaging with various professionals, you can ensure your child receives the coordinated care they deserve. As you navigate this process, remember to also take care of your own needs as a caregiver.

Chelsea lays out how she used the medical home model through four phases of her son’s development, from his birth through high school years.

These previous episodes might provide more information and/or context for this topic (listed in the order of relevant mention within this episode):

• Episode 2: Introducing Justus 
• Episode 19: Diagnostic Criteria for Autism
• Episode 18: Autism Assistance Service Dogs  
• Episode 13: Puberty & Autism    

Here are more topics, terms, and resources, in order of their appearance in the podcast, that might evoke some curiosity:

• medical social worker: a professional who plays a vital role in the healthcare system by providing support to patients and their families who are facing medical and emotional challenges (National Association of Social Workers)
• Wisconsin Medical Home Implementation
• Shared Plan of Care template
• Medical Home Resources for Families and Caregivers 
• Katie Beckett Medicaid
• CLTS waiver program 
• Extended School Year (ESY) 
• wraparound mental/behavioral health services  
• ADRC 
• WI Department of Workforce Development  
• A competency evaluation is conducted by a qualified medical professional (such as a neuropsychologist) to determine whether or not guardianship is appropriate for a disabled adult. See Wisconsin’s GN-3130 for more information.  
• Transition plan https://dpi.wi.gov/sped/about/state-performance-plan/indicators/13-transition
• Epic Systems develops large-scale software systems for electronic health records.

Podcast includes an introduction for episodes 6 and following at the beginning. Transition music, "Taking a Vocation", by Noey Budde.

Closing narration for episodes 6 and following.

Becoming the adult you want to be takes time, self-awareness, and sometimes hard work. Add the dimensions of disability and neurodivergence to adolescence, and the complexities deepen. Chelsea’s guest, Layne Ledding, is a 20-year-old young woman whose poem “Victoria’s Secret” captures part of her journey of “Becoming While Autistic”.

This episode is almost a responsive reading of (most of) the poem, with Chelsea reflecting on parts of Layne’s writing and asking about her lived experience. (Note that the poem’s punctuation and capitalization in the transcript are as the writer intended, but the layout is compromised by the medium.)

Layne lives with her mom, dad, brother, sister, two dogs, and a bird in Kenosha, Wis. She's been interested in writing, poetry, art, and stories in general since she was a child, and interested in mental health since she was in sixth grade. Layne was diagnosed with autism at 14, and she's never stopped learning. She’s a curious, big-hearted young woman who has come far over these past few years with her mentors’ guidance. She processed and admitted she's a lesbian via writing extremely personal (and eminently publishable!) poetry. Lately, Layne’s glamorously gay, proud, and happy.

Please show Layne some love by commenting!

Here’s that whole “Barbie” monologue:

It is literally impossible to be a woman. You are so beautiful and so smart, and it kills me that you don't think you're good enough. Like, we have to always be extraordinary, but somehow we're always doing it wrong. You have to be thin, but not too thin. And you can never say you want to be thin. You have to say you want to be healthy, but also you have to be thin. You have to have money, but you can't ask for money because that's crass. You have to be a boss, but you can't be mean. You have to lead, but you can't squash other people's ideas. You're supposed to love being a mother but don't talk about your kids all the damn time. You have to be a career woman, but also always be looking out for other people. You have to answer for men's bad behavior, which is insane, but if you point that out, you're accused of complaining. You're supposed to stay pretty for men, but not so pretty that you tempt them too much or that you threaten other women because you're supposed to be a part of the sisterhood. But always stand out and always be grateful. But never forget that the system is rigged. So find a way to acknowledge that but also always be grateful. You have to never get old, never be rude, never show off, never be selfish, never fall down, never fail, never show fear, never get out of line. It's too hard! It's too contradictory and nobody gives you a medal or says thank you! And it turns out in fact that not only are you doing everything wrong, but also everything is your fault. I'm just so tired of watching myself and every single other woman tie herself into knots so that people will like us. And if all of that is also true for a doll just representing women, then I don't even know.

Want more? These previous episodes align well:

• Episode 13: Puberty & Autism 
• Episode 25: Trauma & Autism

Podcast includes an introduction for episodes 6 and following at the beginning. Transition music, "Taking a Vocation", by Noey Budde.

Closing narration for episodes 6 and following.